Tuesday, September 08, 2009

A miracle- or something else?

Back in 2006, in Florida, Amillia Sonja Taylor was born premature- only 21 weeks six days old. Despite having a less than 10% chance of survival, she not only lived but thrived- after four months of intensive care, she was sent home to begin a normal life. Today she's a healthy two year old , developing normally. Doctors called her a miracle baby.

British doctors of the NHS would have called her something else: dead. As Sarah Capewell discovered, a baby of that age is legally a fetus, not a baby, and medical attention is refused. "A young mother's premature baby died in her arms after doctors refused to help. Sarah Capewell, 23, gave birth to her son Jayden when she was 21 weeks and five days into her pregnancy. But doctors refused to place the baby in intensive care because he was delivered two days before the 22-week gestation limit. Medical guidelines state that babies born earlier than this are still a foetus and are declined intensive care treatment. Baby Jayden cried out and lived for two hours before he passed away at James Paget Hospital in Gorleston, Norfolk, in October 2008." As agonizing as those two hours must have been, Sarah learned later in discussion with other mothers that some preemies had lived as long as five days on their own, with no medical attention at all being provided.

Could British doctors have saved Jayden, who weighed more at birth than Amillia? We'll never know; set rules from above determine what kind of medicine is practiced in the NHS system. "The medical guidance for NHS hospitals, limiting care of the most premature babies, was drawn up by the Nuffield Council on Bioethics in 2006. It says intensive care should never be given to babies below 22 weeks gestation and rarely to those below 23 weeks." It's not cost effective to spend time and energy on babies- sorry, fetuses- who aren't going to live anyway. They must be right; such fetuses never do live- in England. Not for more than five days, anyway.

This is the system some want us to emulate. If we have the "public option", it, too, would have to have something similar to the Nuffield Council on Bioethics- nobody's going to issue doctors blank checks. Those councils, too, will have to be arbitrary- too much flexibility would be the same as the blank check. And while only a racist tea-bagging birther right-wing political terrorist would call such a council a "death panel", baby- sorry, fetus- Jayden is in fact dead.

I know some will say such councils exist today, in the form of what insurance will and will not pay for. True, but we have the option of saying, "Go ahead and do the procedure anyway, doc, I'll be responsible." Amillia's parents took home not just a daughter, but also a $40,000 debt. Sarah Capewell left the hospital with no debts- but also with no son. She wasn't offered the choice. We must make sure that if a public option passes, we always have that choice. Conventional wisdom may say that you're tilting at windmills, but sometimes the windmill is beaten- ask Amillia.

1 comment:

politywonk said...

Thanks for sharing that horrifying story from the UK. However, let's face the fact that American mothers have a high rate of premature delivery; these kids often go on to have other difficulties. Much as we hate the word "mandatory," if we are going to offer people the choice of infant medical care prior to 22 weeks, we have a right to insist that they accept greater supervision of pre-conception health practices. I don't know what those would be -- maybe check-in groups at various likely places, such as hair salons and churches -- but something that fits into real life. Probably aimed not at husband-wife families only, but also at fertile singles and the parents and even grandparents who are still feeding and housing quite a few of them.